Family issues!

[JannaLee]

Cinmac,

Me too, honey.

This is the loneliest thing I've ever had to do.

Janna

[lesmom]

Cinmac,
Sending you a big hug.
Luckily my husband has been pretty supportive. I think he sees how frustrated I've been by being so warn out and just not feeling good. My kids are 11,8, and almost 6 so they don't really get the concept. They don't like it when I tell them I'm not up to playing with them right now. We live close to my in-laws and they really don't ask about it and I've never had a very close relationship with my MIL to think that she would. The one that has been the hardest family member to get through to is my own mom. She's not around me all the time- my folks live 2000 miles away. And the visits are few and far between. The times she has seen me was when I was recovering from surgery. I think she got frustrated with me because she thought I should have been bouncing back a lot quicker. She's sure that I can cure this with "just eating better."- "you don't need those drugs." I sent her links to help explain SJS as well as Raynauds. I want her to have more insight that this isn't a quick fix and that my body IS being attacked. I work a full time job, we ranch, plus we got 3 young boys. It takes a lot. I'm so glad to have this site because I see there are others going through the same ordeals. and whats that saying- misery loves company.
Bless you all,
Leslie

[kimbo]

Still keeping up with this thread, I feel troubled for my sjoggie pals that live with the conflick of relatives that lack understanding.

I think long before I was DX with Sjogren's, I had narrowed down my realm of trust. Relatives who tend to lower my personal esteem, I have placed at a safe distance.

Fortunately , my husband and children, I hold in that inner circle. I also have my dear sister who genuinely cares , I feel very blessed with enough support and understanding.

I think my conflict in my AI journey is that I am a pastors wife. Because I feel I am definitely in a position where people seem to look at my husband and I as caring ,listening, and ministering to everyones needs. I am suppose to be healthy and balanced in all ways. Because of this I have talked with few people in my church (17 years ) community and fellowship of people there. It has been in this area that I believe if I tried to communicate fatigue or any of the characteristics of my AI issues it would cause rumors and ad version to me being weak.  I know with some this might not be true, but with some it would be. So I have chosen to keep silent about it.
This is why I am so thankful for this special forum, that holds for me such great support and understanding. Where I can come and release what I can not other wise find such a kinship of sjoggie understanding.

I appreciate sooooo much all those that come together here with great compassions,  kimbo

[SassieCat]

You know ....... it was really a hard concept for me, myself to understand how all of this is affecting my life.  When I think my symptoms come and go as they please no matter what I do, I can imagine that it would be hard from someone who is healthy to grab the concept.  It is for this reason that I quit talking about it too.  If I say one thing, someone may perceive it in their own way of thinking and not how it really is.  I have a husband who says, "I know how you're feeling" but; he then says do you want to go shopping and walk around the mall in the next breath.  He really has no clue. 

I find that it hurts just as much for someone to have the right words but the wrong actions to back them up.  My other pet peeve is those who watch TV commercials.  Just pop a pill and it's all gone. 

The up side of all this is this:  This is how I come to be on this and other sites.  This is how my world has expanded and is a better place because of you.  This is how I am learning to live a better life and to manage my illness.  When I am suffering, I really don't need non-believers with me.  When I suffer I do need the support from people who know and are there for me.

[pmortimer3]

 I can relate with this issue. My ex knew me before the SS got bad. I was very active then and was participating in many
organized sports. All that changed in my late 40s. I had many bouts with the swollen, painfull joints that refused to work
for months at a time. I started putting on weight as I couldn't exercise at all. When the flare went away I tried my best
to get back in shape, but each time it became harder to get over the problems. She has been angry at me for quite a while
as I spend so much time watching TV and reading books. I don't think she can understand how tired you get with this Syndrome.
You have to fight the urge to be sedentary as that can make you feel even worse, both physically and mentally. We have finally
separated after 18 yrs and the stress has been a real challenge but things are getting better finally. I hope in the future these
diseases are more readily understood by more people. I hope I find someone who can be more understanding and thoughtful
about what we go through.

Thanks for letting me vent
Rick M.

[jdryer]

Cinmac,
   A lot of us know what you are going through.   I've been on both sides of the issue, since my mom had Sjogrens, too.   I felt sorry for her, but didn't really believe how bad it was for her.   I saw her as lazy.   Even when I started having symptoms myself, I didn't understand, because mine were mild.   As her health declined through the years, it became apparent that her illness was real and serious.   I became a believer.

   Now that I have more involvement going on with the disease, I wish that my family could understand it better.   I know that they don't understand, though, just as I didn't.   And if passing this on to my kids is the only way they'll ever understand, I hope they remain oblivious.

   I'm sorry that your family have so little respect for what you are suffering.   Please believe that they all love you and wish you were well!

Hugs,
Cheryl

I too had the same thing happen to me.  when I was in high school I could not understand what was happening to my mom, she has lupus & I had no clue what that was, neither did the rest of our family.  Now that I have some kind of autoimmune issues, I understand what she was going through.  The difference is that my mom is much more gracious & handles WAY better than me.  I always felt guilty about the way I acted & felt so when I started w/ symptoms, no diagnosis yet, I felt that God was punishing me for my sins.  Now I understand my family's attitude towards me because it is deja vu for me.
Aloha,
j

[Life Coach]

Hello, Cinmac.

This a new reality for me (Sjogren's), but I'm not so new to relational issues.  For what it's worth, I wish to add just a couple of thoughts to the already very caring responses you've received.

One person recommended asking questions of your loved ones.  In coaching, we find this to be one of the most powerful tools available.  We must be careful that they are not questions designed to reach a specified end - other than allowing the other person a safe place to reveal their feelings.  Navigating change is difficult for most of us.  We are more likely to become compassionately open to the difficulties of others if we have room to explore our concerns . . . even if our initial concerns are that we feel someone is making too much of their problems.

Now, meanwhile, you need support.  I also appreciated the suggestions about finding support in your community.  We want our families to understand; and to realize how this condition has devastated us.  Sometimes, however, we asking for something that (no matter how truly unfair it is) simply isn't available to us right now.  We may not be able to get what we need from the ones from whom we want it.  But we don't need to stand in this alone.  It's okay to expand our emotional resources.  And it's okay to ask ourselves about our own physical and emotional pain.  There may be instances when I am trying to convince others how very strange and awful my ailment is, when the person who really needs to understand me.  This condition is daunting, at best.  Facing that squarely is. at the very least, unpleasant.

I applaud the courage you have shown in going through this on your own.  It gives me a little glimpse into the strength you have inside.  Additionally, you openly accept the hurtful behavior of your loves ones.  It doesn't mean you like it; but accepting the way things are and your feelings about them (no matter how uncomfortable) are often critical steps in finding a way to move forward (although most of us would probably just like to go back to before this condition took over a good part of our lives).

I do hope you're able to obtain a definitive diagnosis.  I dealt with the increasingly perplexing symptoms for about 5 years before the doc even had any idea which way to look.  You've been dealing with this far longer than that.

Wishing you the best on this strange but fascinating journey,
Life Coach